Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Dr. Enlander speaking in London Aug. 18

Discussion in 'General ME/CFS News' started by Nielk, Aug 9, 2011.

  1. Nielk

    Nielk

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    Dr. Derek Enlander will be giving a talk on the latest developments in diagnosis and treatment in ME/CFS in Central London August 18th .
    He will be talking about XMRV, MLV, Ampligen, GcMaf. New Nexavir capsules etc

    It will either be in a formal meeting room at the Department store John Lewis (Oxford St London W1) or a meeting room at a local church just off Oxford St in London W1 (nearest tube Oxford Circus or Bond St).

    further details to follow when available.
     
  2. vli

    vli

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    Nielk yes I have been following this. (Yes I knew Enlander was your physician btw!! :).) Unfortunately I'm FLYING out of the country the very night he's giving the talk but i hope to death i can catch an hour of it before I rush off to the airport or get to see him one or two days before when he gives private consults so I can ask whether he'd start giving ampligen any time soon. Right now it looks like (if my parents are convinced enough to agree to fund my trying it) he's the doctor I'm most likely to try get it from... because of his location in NYC and I have family in NYC.
    Anyway thanks for this Nielk :)
     
  3. *GG*

    *GG* Senior Member

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    He posted about this on Facebook. He said he was seeing patients after the talk. FYI

    GG
     
  4. ukxmrv

    ukxmrv Senior Member

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    The talk on the 18th is full. There is a waiting list for places. Email the Central London ME group contact

    abarclay@onetel.com.

    If anyone would like to see Dr Enlander as a private patient he has appointments available on the 18th August in London. I saw him last year and he is a lovely doctor.
     
  5. Enid

    Enid Senior Member

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    Couldn't go but it is a delight to see people like Dr Enlander spreading his knowledge to patients in the totally ignorant UK establishment. Thank him for coming !.
     
  6. Mark

    Mark Former CEO

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    Note that we very fortunate and very grateful to have Dr Enlander as a member of this forum, with username denlander, and he can be PM'd or emailed via PR...email would have a better chance of reaching him I think, since PMs may not necessarily reach him if he doesn't log on to PR for a while...
    http://forums.phoenixrising.me/member.php?1442-denlander
     
  7. Enid

    Enid Senior Member

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    Thanks Mark - nice to hear you again - hoping better.
     
  8. ukxmrv

    ukxmrv Senior Member

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    I'm going to this talk and will try to post here later. Dr Enlander has arrived in London.
     
  9. Sasha

    Sasha Fine, thank you

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    Thanks, ukxmrv - it will be very interesting to hear about that. It's great that he has come to the UK.
     
  10. Enid

    Enid Senior Member

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    Much looking forward to hearing too - when you are able.
     
  11. vli

    vli

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    hope to see u later ukxmrv!
     
  12. Sushi

    Sushi Senior Member Albuquerque

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    Any reports yet from his talk?:thumbsup:

    Sushi
     
  13. Jenny

    Jenny Senior Member

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    I went to the talk yesterday, and made a few notes about his current treatment protocol. (The talk was broader than this, but covered mostly familiar ground on history of the illness and current research.)

    Current treatment:

    Hepapressin complex weekly (this is a kutapressin derivative) - he didn't specify dose
    Betamax - sublingual B12 (methylcobalamin) - spray under tongue twice daily
    Lectrolyte - sodium, potassium, magnesium and calcium with trace zinc (similar to Blasi compound) - two teaspoons twice daily
    Immunoprop - glutathione, l-cystine, and selenium - one capsule twice daily
    Immunoplus - folinic acid, folate, B complex, NAC, phosphadylserine, magnesium, zinc and selenium - one capsule twice daily
    Catapult (for brain fog) - picamillon, cat's claw, glutathione, L-cytsine, and selenium - one capsule twice daily

    See www.immunoprop.com and www.enlander.com

    He's followed up a group of over 200 patients on this treatment for a few months (can't remember exactly how long - either 3 or 6) and there was a significant improvment on Karnofsky fatigue scores over this period.

    He's also got some patients on GcMaf and hopes to start a new trial of Ampligen next year.

    Jenny
     
  14. Enid

    Enid Senior Member

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    Many thanks Jenny for your feedback -I'm going to have a re-look at all my supplements now ! Just wish we could ever get antibiotics in the UK, can't help thinking earlier treatment may have saved one so many problems.
     
  15. vli

    vli

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    Hi Jenny, I was there too--too bad I didn't know who you were amongst everyone!

    I don't know what he said abt ampligen in the talk as I'd to leave early but from the consult I had w/ him earlier, he'd said that he expects to start infusing his first patient by mid-Sep '11. I even asked him if I decided tomorrow to move to NY and see him when he would be able to start me on amp (hypothetical of course), and he said I would be able to get my first infusion by the end of October(!!!).

    Did he say much else about ampligen?
     
    garcia likes this.
  16. stevenski

    stevenski Guest

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    test test test
     
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  17. ukxmrv

    ukxmrv Senior Member

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    It was a miserable rainy day in London but Dr Enlander was a ray of sunshine.

    We have few doctors who will now treat patients with ME and CFS in the UK with any experimental treatments. Dr Enlander visits from the USA once a twice a year.

    He spoke about some of the viruses commonly found in CFS patients like HHV6. Showed a slide of a autopsy biopsy from one of his patients who had tragically committed suicide. There were sign of HHV6 on his heart muscle. He mentioned the test that he does in his office to show how heart function is impaired.

    Also a slide of an infected Astrocyte (sp?) from the temporal lobe also infected with HHV6

    He talked about some of the current antiviral drugs used. (inc Ampligin). Someone asked about Ampligin in the UK but Dr Enlander didn't know of any dr here interested in doing a trial or able to offer the drug.

    Dr Enlander showed a complicated slide of the methylisation cycle and credited / mentioned the work of Rich VKB and Dr Cheney.

    Then he went through the 3 treatment plans he used.

    Dr Kerr was spoken about warmly. Dr Enlander has tried to track him down without success.

    Then on to Ampligin and GCmaf (I'd run out of hand writing strength by then). Only noted that Amp was US$12000 for 6 months. One patient asked about IRIS with GCMAF and Dr Enlander addressed this but I wasn't quick enough to write it down.

    XMRV was only really covered by slides of the original science paper and one that was a recap of the history since then. Dr Enlander spoke about the researcher battle.

    Someone asked about the missing XMRV samples that Dr E sent to the UK and they are still missing.

    The last thing I noted was that he is involved with these research projects.

    GCMAF/Nagalese with Prof Kenny DM
    Ampigin with Hemispherix
    B12 with sub Methyl B12
    Carnitine in CFS
    HS2
     
    garcia likes this.
  18. Jenny

    Jenny Senior Member

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    Sorry not to have met you vli!
    Apart from what ukxmrv says below about ampligen, I can't remember anything else I'm afraid.

    Jenny
     
  19. froufox

    froufox Senior Member

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    Hi ukxmrv, Jenny, vli and all,

    I was at the talk too, thanks for the great summaries ukxmrv and Jenny. I just wanted to add to your post that in regard to GcMAF, it was me who asked about inflammation and Dr Enlander said that he has good results with IRIS using the anti-histamine Diphenhydramine hydrochloride. Other than that he said he mentioned 2 patients of his patients on it, one of whom was doing very well and another who had problems with IRIS. Also just mentioned that it is too early for him to give a proper report on that.

    Re ampligen, he didnt say very much, just mentioned the 5 centres doing studies. Apart from what Jenny said I dont recall him saying much more than that really that other than his Ampligen study starts in about 3 weeks in New York.

     

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